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Thank you for your very thoughtful response. My CD4 count was tested and it was normal (actually on the high side - I forget the number). So my immune system was normal about 3 months ago. I don't know what I'm going to do next. I am beyond scared because I feel I have nowhere to turn - I'd much rather have cancer because I'd at least have a treatment plan. I can't imagine a worse nightmare!
Viral load wouldn't help? western blot? I agree, I'd like to go to a renowned expert maybe at Mayo or John Hopkins. I'd like to mail them what I posted here but I don't know if they'd read it
Elisa tests for antibodies and Viral load looks directly for HIV. That's my understanding. If I've had HIV for 10 years, is it possible the antibodies aren't showing up? This is why I was thinking Viral Load
I thought I read there was a different test for donating. Where they put a bunch of donations together ant then test. Something like viral load or amplified.
I have a growing list of symptoms and they seem to be mostly related to the brain... not getting opportunistic infections that I know of.
I've seen a neurologist and all he did was some walking around tests and gripping tests and asked a couple questions. Of course I was feeling well that day so nothing showed up but even if I had problems, I don't think he'd say HIV.
I can't see it being anything other than an HIV strain. How can so many symptoms happen simultaneously otherwise. If you were experiencing what I am, you'd think the same thing - I see no other alternatives.
Dr. Is it of your opinion that even though I have all these HIV symptoms simultaneously that HIV should be ruled out? I don't know how I could possibly rule it out. You'd have to imagine yourself experienciencing evertything in my intial post and ask yourself what you would be thinking. It's so convincing to me that I feel further testing has to be HIV related
What I see in my wife and daughter further convinces me there is only one place to look but it seems there is no way to prove it. ELISA isn't 100% and does it cover every strain around the world? If a doctor could feel my symptoms, they'd be convinced of the direction to be looking. They can see the gums but the rest they have to take my word for - if they could experience it...
Per http://www.thebody.com/content/art2302.html if you have a normal CD4 cell count, it does not necessarily mean that you do not have HIV.
By far the worst symptom is the ability to reason at work. I'm an engineer and planning and reasoning, etc. is very important. The neurologist I saw did nothing in that regard. I saw a psychologist who gave me some memory test and he said it was normal. But what he doesn't understand is I was way above that level a year ago. You have been wonderful and I will give you the highest rating. I just wish I knew what to to next. I hate to sound stupid but I wish I could get tested for HIV and be positive and start getting treatment - this is how I strongly feel
OK. One last thing. As far as viral load type tests. If I did that and it showed I have HIV, could that trump the ELISA negative? Could I begin treatment based on that since I have all these symptoms?
Also, I think I had some kind of super immunity before. I never got a flu shot and never got sick. Maybe my CD4 would take longer to go down?
I don't know why but I think a viral load test would catch any weird strain I might have. If I tested positive on that then they would probably try Elisa again and it would be negative. But maybe then Viral load again for a positive, being enough to trump Elisa, especially in light of the symptoms. And I'd hope the tests would be covered under my insurance.
In some ways it seems illogical to get viral load or amplified, etc. but I see no other options since ELISA was negative. Is it 100% illogical to do more testing? I'm sorry for making you work so hard but I am very appreciative (you are much more caring than other doctors on this site - God bless you!)
But if it was positive and I still wasn't given the diagnosis because of neg ELISA, I'd have LESS peace of mind, right?! I don't want to do a test to feel better. I only want to do it if it makes sense
Could blurred vision, stiff jaw, cognitive problems all be neurological? I know the gum problems aren't neuorological